CLEAR trial UK: Hi all has anyone been involved... - CLL Support

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CLEAR trial UK

speckly profile image
8 Replies

Hi all

has anyone been involved in the CLEAR trial using a combination of antibiotics for two weeks followed by one year monitoring ? Partly it is for patients who have CLL but not ready for treatment yet Any info would be really hefu

Whilst I am making a decision whether or not to give it a go. Have had CLL since 2008 and am on w and w bit seeing a lovely professor im Leeds with a view to getting Mtobook a trial .Would love to hear from anyone who is either being offered or is actually on the trial. thanks

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speckly
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HAIRBEAR_UK profile image
HAIRBEAR_UKFounder Admin

The trial is studying the role of bacterial infection in driving early CLL Not sure how much benifit a person may gain from the antibiotic cocktail for a few weeks but the screening and testing process that accompanies the trial will provide you and your clinician with more detail about your disease over the year.

cancerresearchuk.org/about-...

speckly profile image
speckly

Thanks for this. I have all the trial details but just wanted to see how the cocktail has affected people. I find out today whether my ct scan shows my lymph glands are not affected then get the go ahead for the trial. Anything that gives the medics more info on treating us is a bonus. I feel that if there is something that can treat and put into remission early it would be really good for those who are getting debilitating symptoms but not yet ready for chemo .

Thank for this information Nick. I would not be surprised if this trial does prove helpful as I've often wondered if my persistant and recurring sore throat could have triggered the onset of CLL.

My doctor never gives me antibiotics presumably as they want to keep them in reserve for the future when I might need them most. I would be reluctant to take antibiotics now for this reason and because a long time ago they did not seem to agree with me.

I will be awaiting the outcome of this trial with interest.

Bub

speckly profile image
speckly

Hi Bub

I have had recurring throat problems too ad lots of infections and fatigue as well as sweats so hope I get on the trial. Take care

in reply tospeckly

Annoying isn't it speckly, someone has to keep the Strepsil company and Boots in business I guess. I'll be thinking of you and hope you can clear your infections. I'm fortunate that although I have problems with my thermostat (always warm) I don't experience drenching sweats at the moment.

Have a good day

Bub

speckly profile image
speckly in reply to

Feel for you Bub it is awful and part of it is the unpredictability . Take care and keep away from people with sore throats!

HAIRBEAR_UK profile image
HAIRBEAR_UKFounder Admin

Yes the trial excludes you if you have an infection or are being treated for one. hope for a clear spell.

speckly profile image
speckly

Good news ! Am on the trial and go to sign consent from and have more blood tests on 26 Nov. Anyone else doing the same journey? Would be great to have a fellow traveller

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